Collected
13.688€
To benefit
A possible future for Pol and Àfrica
Pol and África, two 5-year-old children with a mutation in the ATP6V0A1 gene
Collected
13.688€
Goal
100.000€
Donations
180
Left
339 days
In support of
Cause lead by
Category
We launched the association Un Futuro Posible for Pol, a 5-year-old boy with an ultra-rare, non-inherited genetic mutation that affects his development. Pol is from Mataró, Barcelona, and was born healthy. But at 4 months old, he began a long journey of hospital visits and tests at Sant Joan de Déu Hospital in Barcelona because something was wrong. Four years later, the diagnosis finally came: a mutation in the ATP6V0A1 gene.
Through this association, founded by his mother and me, a family friend, we aim to raise funds for research and drug repurposing (in other words, testing whether medicines already on the market could help these children). Thanks to Un Futuro Posible, we have connected with a research centre in Ireland, where the researchers (who also have a daughter with the same genetic mutation as Pol) are helping us carry out research using Pol’s cells, with very limited resources.
The process is slow, but we are hopeful and excited about the possibilities. Pol is happy in the world we share, but his genetic condition puts an invisible brake on his progress: for now, he cannot walk, talk or chew, although he tries.
His journey is not straightforward: small steps forward, setbacks, hospital stays and times when we have to stop or, often, start again. His therapies are ongoing and expensive, and the emotional and physical toll on the family is enormous, with constant uncertainty about the future.
We also live with epilepsy. This means being constantly on alert, 24 hours a day, 365 days a year. An unexpected seizure can happen at any moment (and, sadly, this has already happened several times), with the risk of becoming severe or causing further setbacks in his development. This constant vigilance deeply affects family life, shaping decisions, routines and even the most ordinary moments.
The bittersweet news of his diagnosis came in June 2025. And that is where this association began: to make sure that Pol’s future—and that of many other children—is not held back by a lack of research.
Through the association and our fundraising efforts on Instagram and LinkedIn, as well as our red bracelets, we learned of another case in Spain, this time in Valencia: África, whose story is similar and who has the same genetic mutation, ATP6V0A1.
África had her first seizure when she was five months old. That was when the nightmare began: hospital stays, tests and uncertainty. In her case, the devastating diagnosis came when she was a year and a half old.
África continues to have recurrent epileptic seizures and has a severe intellectual disability that profoundly affects her daily life.
That is why you are reading this: for Pol and for África.
We need help to carry out this research—a real opportunity to better understand their condition and improve the quality of life of our children and our families.
Through this association, we have three aims: to share our stories, raise awareness of this mutation and fund research to give them a better life.
And this research is real. Pol’s cells (he started the process first) are already in Ireland, where, after a lengthy process, they will be transformed into neurons carrying his genetic information. These will be used to test existing medicines for potential new uses. África has also joined the programme.
We know that a condition as rare as theirs (with only 15 documented cases worldwide) is unlikely to receive dedicated research. That is why we are grateful to have been able to map out a path forward, thanks to the donations we have already received.
But we need much more. So much more.
Migranodearena is a popular, well-established crowdfunding platform in Barcelona. Through it, you can donate easily and securely. And as well as helping us give Pol and África a future, your donations may be tax-deductible.
Please donate for Pol and África, both 5 years old and affected by this ultra-rare mutation in the ATP6V0A1 gene. Your donations will allow us to continue our privately funded research into medicines already on the market that could help give them a better life.
We need you.
Thank you so much.
En Pol va néixer aparentment sa, però als quatre mesos de vida vam començar a notar que alguna cosa no anava bé. Aquell va ser l’inici d’una etapa de desconeixement, por i moltes incerteses. Durant anys hem viscut sense diagnòstic, lluitant amb teràpies constants per una evolució molt lenta. En Pol és feliç dins el nostre món, però la seva malaltia genètica li posa un fre invisible que li dificulta avançar. En Pol no camina, no parla i no pot mastegar, tot i que seguim lluitant per continuar avançant, poc a poc, cap a un futur millor.
El seu camí no és lineal: petits progressos, caigudes, ingressos hospitalaris i retrocessos que obliguen a aturar-se o, sovint, a tornar a començar. Les teràpies són indefinides, costoses, i el desgast emocional i físic per a la família és immens, amb la incertesa constant sobre el futur.
A més, convivim amb l’epilèpsia. Això significa viure en un estat d’alerta permanent, les 24 hores del dia, els 365 dies de l’any. Qualsevol moment pot desencadenar una crisi inesperada, amb el risc que aquesta derivi en episodis greus o provoqui nous retrocessos en el seu desenvolupament. Aquesta vigilància constant marca profundament la vida familiar, condicionant decisions, rutines i fins i tot els moments més quotidians.
El juny de 2025 va arribar una notícia agredolça: finalment vam tenir un diagnòstic. Ens va portar esperança, però també tristesa, perquè hi ha molt pocs casos al món i gairebé cap recurs destinat a la investigació.
Però aquí és on neix aquesta associació: perquè el futur d’en Pol —i el de molts altres nens— no quedi aturat per la manca de recerca. Perquè amb la teva ajuda, allò que avui sembla impossible pugui convertir-se en una oportunitat, en un avanç, en un futur digne.
Amb tants pocs casos d'aquesta mutació genètica no hereditaria al món (enfermetat rara), donem per fet que no s'investigarà mai. Però tenim la possibilitat de recaptar fons perquè un Centre d'Anàlisis genòmic pugui investigar d'entre tots els medicaments que ja existeixen al mercat, quin podria aportar efectes positius pel Pol.
Per això necessitem la teva ajuda. Necessitem recaptar fons per investigació, per donar al nostre fill un futur possible, una vida millor. Volem aconseguir que tingui una vida digne.
Al llarg de la història, altres casos d'enfermentats rares no investigables han trobat una sortida en la recerca mèdica actual. Lluitem pel mateix.
Gràcies.
Donators (181)
Carmen
50€
14 hours ago
Ana Rita
50€
16 hours ago
Anonymous
10€
17 hours ago
Julia
20€
17 hours ago
Alicia
10€
20 hours ago
Anonymous
50€
One day ago
Paula
50€
One day ago
Sheila Elowsi estellés
20€
One day ago
Anonymous
Hidden donation
One day ago
Anonymous
20€
One day ago
Anonymous
35€
One day ago
Evelyn Bernabe Robles
5€
One day ago
Toni
10€
2 days ago
Lucas
5€
2 days ago
Manuel
50€
2 days ago
Manuel
50€
2 days ago
Silvia
35€
2 days ago
Javier
250€
2 days ago
Laura
Hidden donation
2 days ago
Lorena Tirado
5€
2 days ago
Marta Garcia cidon
50€
2 days ago
Maria
50€
2 days ago
Anonymous
Hidden donation
2 days ago
Laura Martínez
7€
2 days ago
Carolina Torrijos
Hidden donation
2 days ago
javier
35€
3 days ago
Beatriz
20€
3 days ago
Benavent
10€
3 days ago
Virginia
50€
3 days ago
Teresa
Hidden donation
3 days ago
Olivia
10€
3 days ago
Estefanía
10€
5 days ago
Virginia
Hidden donation
8 days ago
Àngeles
35€
9 days ago
Laura
100€
11 days ago
Anonymous
350€
24 days ago
german
50€
24 days ago
Anonymous
35€
25 days ago
Sara
35€
25 days ago
Gonzalo
35€
26 days ago
Pere
100€
26 days ago
Anonymous
Hidden donation
26 days ago
Anonymous
Hidden donation
27 days ago
Joan
250€
27 days ago
Carles
45€
28 days ago
Jose
25€
31 days ago
Josep Maria
100€
36 days ago
Marta
150€
38 days ago
César Cruz
100€
38 days ago
Kiko
35€
38 days ago
Comments (59)
Julia
Mucha fuerza
Alicia
Mucho ánimo 😘
Sheila Elowsi estellés
Vamos guerreros 💪🏾💪🏾
Javier
Vamos a por todas!! Animo Africa y Pol !
javier
aurrera
Beatriz
Un abrazo y ojalá lleguemos
Estefanía
Lo estais haciendo super bien, campeones.
Virginia
Jo, pel cumple meva germana directa a per em Pol ....Donamos todos🏆 venga
Gonzalo
Mucho animo
Pere
Ànims!
Carles
Molts ànims família!
Kiko
Gracias por esta iniciativa
Gonzalo de Saavedra
Admirable Silvia. Tu esfuerzo es más fuerza que transmites a Pol y su familia
Alba
Tot és possible
Un futur Possible
De part de l'Alexis i la Gemma
Mercè
En Pol i altres nens/es com ell s'ho mereixen!
Nuria
Mucho ánimo a las mamás de África y de Pol sois un ejemplo a seguir
NOU TEAM SERVICIOS CORPORATIVOS SL
Laura, molta força i endavant 💪
Adria
aportació ester nogueras
Montse
Laura desde Paris molts anims i molta força ,no sé si si aquí frança Hi ha algún estudi pero si vegessis alguna cosa digam'ho i tajudare en el k pugui traductora etc..
Per cert soc la Montse una forta abraçada
Laura
Per en Pol.
Per els qui no poden córrer.
Eva
Valents
Roser
Endavant i molta força, estem amb tu
Valentí Masachs
És important donar visibilitat aquest tipus d'enfermetats
Marta
Ánimo familia!!
Ines
Molts anims familia, un peto pel Pol
Irene Regol Sabe
Molt d’amor pel Pol i la familia! Anims
Cristina
Mucha fuerza 💪
Janira Carmona Murillo
Janira
Clinica Avancada Maa S.L.
Centre Maa (Dani i Maite)
Marc
Molta força, Pol&Familia!
Deni
Molta força Laura i familia
Carmen
Molta força!! Ho aconseguireu 💪☺️
Aina
Ànims família!!!!💪🏼💪🏼💪🏼🥰🥰🥰
Anna
Anims amb el repte i enhorabona per la iniciativa!
Victoria
Tant de bo amb aquestes iniciatives trobin una cura per al Pol i pugui tenir la vida més digna possible, tal com es mereix.
Sandra
Segueix lluitant com sempre ho has fet Pol!!
Jesica
Entre tots ho aconseguirem. Petons
Paula
Tots lluitem al vostre costat, que en viviu el dia a dia amb una força admirable. No esteu sols!
Jaume
💪
Helena
Força Pol!!!
Virginia
POL ets un tresor de vida ..Ganes de aportar i veure la teva evolució Virginia
Montse
Molta força !!
Natàlia
💪🏾
Amèlia
Endavant, Pol!!!
Mercè
💪💪
GLORIA
Una abraçada per a en Pol i per a tota la família!
Imma
Molta força 💪
Irma
Una abraçada ❤️
Laura
Per en Pol ❤️
Un futur Possible
Córrer per qui no pot fer-ho